One of the exciting aspects of my work at CLASS is to partner with organizations in trying to learn more about ways to help individuals or families find greater success in community. One such partnership has been with Chatham University in Pittsburgh. Over the past couple years Chatham and CLASS have been working on a Family Engagement Study where we compared and contrasted the engagement patterns of 50 families, 25 who have children with disability labels and 25 who have children without disabilities. This study was further enhanced by including our partner agency in Brisbane Australia, Mamre Association, who mirrored this effort with 50 Australian families.
We are writing up our results now, but in both the US and Australia, we found that families who have children with disabilities engage less. They don’t go out as often, and have less community exposure. In a way this did not surprise us, but what did was the qualitative follow-up we did with the families who have children with disabilities. We found 3 key reasons why these families engage less.
One reason was economics. Quite simply, families with children who have disabilities have less discretionary money, and can’t afford to engage as much. This is consistent with other studies that show clearly that disability is costly. Medical appointments, equipment, therapies and the like take their economic toll.
The second reason reported was around logistics. Figuring out all the details and planning for the things that might happen related to the disability are sometimes overwhelming. I understand this in a personal way when my family were planning an outing with my dad, who had Parkinson’s. We had to consider everything that might unfold and sometimes this would be so overwhelming that we would decide to just stay home.
Last, we discovered that families felt strong social stigma from others that they just didn’t feel welcome in the venue. They reported eye rolls, people moving away, and other social indicators that they weren’t welcome.
In a way, recognizing these variables has a positive residue. That is, we now have a target to go after in an effort to help all families engage. The notions of economics, logistics, and social stigma are items we can develop some social approaches to change, though all 3 of these issues will not be easy to fully resolve.
Still, knowing the challenge is the first step in creating a better world, one where all families might feel welcomed. So what can you do in helping to make this happen?